So, back to the thread...
I remember the early years of having all these symptoms. It was 14 doctors in 8 years, and we didn't get very far. Mostly, it was a hurried, impatient conclusion of needing anti-depressants. Ha, ha. "Well, if all they do is help you sleep, you need them." Hunh?? Never mind having upset digestion, breathing issues, bad skin, a challenged liver, and hair the texture of dry straw, among other things. I kissed that regime good-bye in 1995, for good. The doctor I had help me wean off just laughed as he wrote my last prescription, tranquilizers by my request to help me gradually come off. He told me I'd be back. I very emphatically told him he would never see me in his office again -- ever.
Only one doctor would even listen to the full picture. That was in 1992, when the media picked up on fibromyalgia. I clipped a symptoms list and took it to the doctor. He agreed I had all those symptoms (about 12 listed), but told me I was "not in enough pain" to qualify for the diagnosis.
After those 14 doctors, my luck got better. Also, I was seeing alternative doctors, and have ever since. The first one, I love him dearly and we are good personal friends to this day, but he was all about research and facts and really never saw what I was talking about! I have to tell this one on him: I was in one day getting a Meyers cocktail, which he would administer. (He was practicing independently, no office staff.) He very excitedly went off on his latest research venture, about the effect of candida overgrowth in the body. Um, doc... hey, hello??? I have that. Have tried to discuss it with you many times now... He stopped short and looked at me with a blank look on his face. I almost laughed. He loves learning, but somehow applying it to people in real life situations was going past him. We never did get to a practical discussion. I love him anyway, a variation on the absent-minded professor.
The next two doctors were heaven-sent. One was a woman, while I was in Alaska. She looked at my history, my notes on my intake form, read for a few minutes, asked a few questions, then finally looked up at me and said, "You have chronic fatigue syndrome. But you already knew that, didn't you?" I could have cried for joy, even as anti-climactic as the moment was at the 14-year mark of having symptoms. I made a lot of progress with her help.
Back in Utah, I found an alternative clinic run by a medical doctor, and when I need a doctor, he is who I see. (Since 2005.) We ran into a bit of a dead end a couple of years ago. He is not a CFS specialist, and was stumped. But he had given me prescriptions for everything I asked for, per the same course as the previous doctor. It's great having a relationship with a good doctor. He trusts me, and we can try anything I want as long as it's legal! It was nice recently with the bad insomnia and migraine episodes I've been dealing with -- I finally called uncle and went in to get the heavy ammunition. He wrote out scrips for Lortab and Ativan without too many questions. He knows I won't abuse them, and a few months from now, I will take both bottles in to show what's left, as I plan on using very little of either one.
He also is on to the mold and toxicology theories, and had an extremely marked-up copy of Shoemaker's book, parts of which he shared with me. He is encouraging me to try the CSM route and see what that does. It was nice discussing pertinent lab tests! He also recommended oxytocin shots. Haven't decided on those yet.
I was going to make connections with the CFS specialist here in my city, but she has a three-year wait list. Since my doctor is moving forward with theories, I think I will continue seeing him. The hour drive is hard, but at least it is only an hour.